BWH Nurse Clinical Narrative

Nurses are compelling storytellers with compelling stories to tell. Nurses' most memorable stories include situations where they have made a difference, where breakdown has occurred or where important learning occured. Public storytelling among nurses helps make distinctions in clinical practice visible and creates opportunities for ongoing discussion and learning. Even the storyteller learns from telling the story.

BWH Nurse periodically features clinical nurse narratives for the purpose of stimulating discussion and advancing our learning as a professional community. This narrative is told by Carly Caggiano, BSN, RN, Medical Intensive Care Unit, this year's Essence of Nursing Award recipient.

Carly Caggiano, BSN, RN

There was a quiet, calm nature to the floor at 7 a.m. on April 13. I remember her first.

I had just arrived for a 12-hour shift when she came running over to me with a look of sheer terror in her eyes. She was disheveled from a night spent at her son's bedside, wearing clothes so loose they could have fallen off her tiny frame, clothes that had fit her perfectly two weeks ago.

I had my bag in hand and my jacket on, but I could not dismiss her hand as it grabbed mine to come look at her son. She trusted me and needed me. I placed my bag on the floor and entered his room. He was uncomfortable and wanted to turn onto his side. With the help of his mother, we held his many lines and tubes out of the way, turned him slightly on his side, and he returned to his fitful slumber. His mother looked at me with tears in her eyes and thanked me with a slight bow. We could both tell at that moment that he was dying.

I had been caring for him for a couple of weeks in the intensive care unit. He was a young man from China who had recently moved to Boston for graduate studies. He was an only child, and his mother and father beamed with pride over his educational accomplishments and dreamed of his future.

Three months into his first semester, he went to see a doctor because of cold-like symptoms that would not go away. Very shortly after his initial visit, he went to see the same doctor because of a bulging, hard lump in his neck. After a short work-up, he was diagnosed with a rare head and neck cancer that was fatal in every case ever documented.

His Mandarin-speaking parents boarded a plane for Boston to be with their one and only son, knowing only a couple words of English. He and his parents were determined to beat his odds, and do everything they possibly could to beat this cancer.

By the time he required ICU-level care, he had been receiving experimental treatment for three to four months. He had already out-lived his life expectancy from the time of the diagnosis. He had a tracheostomy because the tumor was occluding his airway, a peg tube because he couldn't chew and swallow, bilateral pleurex catheters for his pleural effusions and terrible burns on his chin, neck and chest from radiation therapy.

He was unable to speak, so I got to know him through his pen and notebook as he peered through his black glasses to write to me. The notes were usually one-liners asking for basic needs. Suctioning, turning, pain medication and nausea medication were the typical requests. As I got to know him better and he began to trust me, he would occasionally write a note of appreciation for my compassion with his parents, or ask my opinion on how he was doing.

He had an amazing scientific mind. He was willing to try any treatment or testing if it gave him a chance to cure his cancer. Working in conjunction with a clinical trials coordinator, I was administering a gene-targeted therapy daily that had never been administered to a human. He didn't want his hand held; he wanted to know facts and figures, to get the drug, as ordered, on time every day. I loved how stoic and brave this young man was.

It became clear that the treatment was not helping him. He was getting sicker every day, and the tumor in his neck was visibly larger on a daily basis. As the days went on and we continued with aggressive treatment, he needed to be increasingly sedated. His lungs were failing, requiring increasing support from the ventilator and causing profound shortness of breath. He had copious secretions. His secretions paired with a strong gag reflex caused him to vomit with every attempt at suctioning. He was also experiencing excruciating pain from his neck and chest. He was forced to become more dependent on the people taking care of him.

It was then that I realized I didn't have all the tools I thought I did to care for this critically ill young man. He wanted the help from these two desperate, grieving, sleep-deprived, Mandarin-only speaking people sitting at his bedside morning, noon and night. Mom and Dad.

From the minute he was admitted to the hospital, his mother and father were at his bedside. I have never seen a more devoted family in my 11 years as a nurse. His mother slept in a tiny chair at his bedside with her head resting on his bed every single night. She was deathly afraid of technology, alarms, the sight of blood or sputum, and any discomfort that her son was experiencing. Leaving his bedside to use the bathroom or eat was done in five-minute blocks of time. His father would sit at the bedside and study the English language on his tiny pocket translator in hopes to advocate better for his son.

They explained to me that, in China, family members of a hospitalized patient were required to be at the bedside, provide all personal care including laundering the linens, feeding the patient and providing some treatments, such as dressing changes. I began to honor their cultural practices. As I let his mom and dad provide the care they so desperately wanted to give, the patient became more relaxed and his anxiety improved. I scheduled the interpreter to come to the room five to six times per day. I had the pleurex catheter drainage procedure translated into Mandarin so they could work beside me and empty the catheters daily. Even when the drainage slowed to 3-4cc per day, I still set aside an hour to drain them.

His mom and dad were so very grateful for the task. We would bathe him together, clean his mouth together, prepare his tube feeding supplies together, change his linen together and even administer his gene-targeted experimental medication together. If the interpreter was absent, all of these tasks would be done in silence with body language, smiles and tears as our only form of communication. I passed my experiences on to other nurses caring for him, and we established these acts as a daily routine. The more I let his mother and father do, the more comfortable he was. It was an amazing partnership.

On April 13, the events from the previous shift were tough to hear. I knew he would not survive the next 12 hours. His mom and dad brought me into his room and sat me down. His father had prepared a slideshow on his tablet of pictures of the patient as an infant, child, teenager and most recently, of him as a graduate student. It was an amazingly touching display of their love for their son and their desire for me to know him as more than a patient. It felt as if we were all speaking the same language. His father showed me the screen on his pocket translator, and it read, "You are very considerate of Chinese culture. We like you very much. We will always remember you." He showed me the same words every day.

With extensive coordination including oncology, palliative care, social work, the ICU team, respiratory, pharmacy and interpreter services, we very carefully transitioned him to intensive comfort measures. I realized he did not want my help as he was dying. He simply wanted his mom and dad at his bedside. Short of blousing him with analgesia, I had taught his parents how to care for him among all of the technology, medical professionals and ICU environment. It was the best gift I could have given the patient or his family.

He passed away peacefully with his family and friends at his bedside. I was unable to attend the services held in Boston for him, but I was told his father spoke and thanked every member of his treatment team by name, including myself. I will never forget him and his family. I remember April 13 as if it were yesterday. He taught me the depths of hope, compassion, patience and love that we all possess, but more importantly, share with each other.